P-009: IDENTIFYING BARRIERS FOR PATIENTS WITH SICKLE CELL DISEASE TO ACCESS TREATMENT WITH HYDROXYUREA – A QUALITATIVE ANALYSIS OF THE SUPPLY CHAIN IN GHANA
Authors: GRAVEN S., MARFO K., KARIM A., BISCHOF A., GEISSLER A.
Journal: HemaSphere (2022)

Purpose: One of the main treatments for the life threatening sickle cell disease (SCD) is the generic drug hydroxyurea, which reduces complications associated with SCD and therefore increases quality of life while prolonging life expectancy. Access to comprehensive disease management vary greatly between high- and low-resource countries especially for pharmacologic agents like hydroxyurea. This study therefore aims to examine how patients with SCD in Ghana, access hydroxyurea treatment. Since a country’s supply chain management plays a crucial role in making health commodities available and thereby enabling access to pharmaceutical products, this paper also addresses two sub-questions: What is the status-quo of the supply chain of hydroxyurea in Ghana? What barriers can be identified that hinder SCD patients from accessing treatment with hydroxyurea in Ghana? Materials and methods: We conducted qualitative in-depth virtual semi-structured interviews with 10 key stakeholders involved in the supply chain of health commodities, including but not restricted to hydroxyurea. The questions asked in the expert interviews were supported by a preparatory interview guide containing of semi-structured questions. The interview guide was reviewed by the study team ahead of the virtual interviews. The responses received were examined based on a content analysis and presented in a process map and a causal loop diagram. Results: Our results revealed a high fragmentation and decentralization of the supply chain of health commodities in Ghana that severely compromises the continuous availability of hydroxyurea in Ghana. The results also disclosed that there is currently no central procurement or distribution of hydroxyurea. Outside of the public sector, most patients have to pay for treatment out-of-pocket which is a great financial barrier that leaves many patients unable to afford the treatment. Furthermore, there is a lack of accurate data on SCD prevalence in Ghana, which makes effective forecasting and adequate health interventions challenging. Additionally, health facilities that offer hydroxyurea treatment are mainly located in urban areas, which are inaccessible to many patients living in rural areas. The causal loop diagram depicted below (see Figure 1) summarizes the findings of our study and captures their complexity. It shows the factors that influence each other with regard to the accessibility of hydroxyurea treatment for patients with SCD in Ghana. The arrow between the factors shows the direction of influence and the sign next to the arrow represents the positive (+) or negative (–) influence a factor has on another factor. Conclusion: Based on our evaluation, this study identifies four main barriers that patients with SCD face to access treatment with hydroxyurea in Ghana. These barriers include the lack of accurate data on the number of patients with SCD in Ghana, the high financial hurdles to access treatment with hydroxyurea, the lack of treatment decentralization with hydroxyurea, and the limited availability of hydroxyurea. Digitalization was identified as a common denominator that could improve many of these barriers and therefore could support the wide-scale implementation of hydroxyurea access for SCD treatment.Figure 1. Causal Loop Diagram (own representation) K. MARFO declares a conflict of interest: Stock shareholder: Novartis Other: Novartis employee